MTX versus Prednisolone

[Lizardsyl]

Having been on steroids since May 2015 I will be going onto MTX 2 May 2019. Can anyone who has PMR&GCA let me know how they have got on and whether their illness has gone into remission.

[Marijo1951]

I started taking pred on 31st July 2017 after being diagnosed with both GCA and PMR. The initial dose was 60 mg per day. Later when I was trying to reduce to 25 mg per day I had two flares of GCA symptoms. After the second of these flares just after Christmas 2017, I was prescribed methotrexate as a steroid sparer, initially at 10 mg per week with folic acid on one day of the week, after a couple of months increased to 15 mg per week plus folic acid on five days per week. To date I haven't had any further flares of either GCA or PMR and I haven't had any obvious nasty side effects of taking methotrexate. I go for a blood test once a month. I'm currently at 9 mg of pred per day and due to reduce to 8 mg in two weeks. My conditions haven't gone into remission, but the current dosage of pred is still enough to control virtually all of the pain and stiffness, although it doesn't do anything for the deathly fatigue and general unwell feeling.

[Marijo1951]

Sorry and thank you for noticing my mistake. I should never respond late at night when pred head is at its worst!

I take 15 mg of methotrexate PER WEEK (originally 10 mg). I've corrected my original comment. To clarify, I take my MXT on Friday night, which is 6 x 2.5 mg tablets. I set my alarm for 10 pm every Friday to remind me. I take the folic acid Sunday to Thursday mornings.

[Hidden in reply to Marijo1951]

Marijo

Thanks for replying & clarifying it’s per week; but can l ask again about your dose?

6 x 2.5mg is 15mg of MXT not 60mg

Thanks

MrsN

[Marijo1951 in reply to Hidden]

I know. I've edited my reply further... Just checked - I think all is correct now!

[Telian in reply to Marijo1951]

If you go into 'More' just below your post it will allow you to edit - then if anyone reads it at a later date you needn't worry about having to explain yourself.

[Cally55]

I am on my third steroid sparer. GCA feb 16. Tried methotrexate last june. It was a struggle, sore mouth etc, but side effects diminished after a month. Rheumatologist stopped it because I felt a bit spaced out. Then tried leflunomide, lasted a week! In october prescribed azathioprine, 125 per day, which seems to work a treat, went from 14 -15 mg pred to 9.5 by January this year. Held up at the moment by a bad attack of bronchitis, had to stop the azathioprine and up the pred! Back on azathioprine and reducing pred now.

Side effects seem to be very individual with these dmards (Disease Modifing Anti Rheumatic drug), so persevere. The dmard does not replace pred but helps you to reduce dose quicker. After several years on pred the cumulative dose is getting quite large and rheumatologists get anxious about side effects.

In my case I had got the osteoporosis and vertebral fractures before a dmard was offered, this rheumatologist doesn't rush to prescribe.

These drugs are supposed to increase your chance of infection,I have had a series of colds and flu since taking it, but then my husband has had them too and he isn't on immunosuppressents.

At present I would say that it is a good idea.

[PMRpro Ambassador]

MTX will NOT replace pred IF what you have is typical PMR. It MAY allow you to reduce the pred dose more easily without flares or it MAY allow you to reach a lower dose as it potentiates the efficacy of the pred.

I do hope your rheumy hasn't promised you anything that isn't in his power to control.

Good luck and I hope your experience is better than mine.

[FRnina]

I've had PMR/GCA for 2 years. Started with high dose Pred then when reducing had a couple of flares so, after 3 months put on MTX (10mg 1x weekly, later put up to 15mg 1 x weekly). with 15mg Folic Acid 1 x weekly. Presently at 6.5 Pred. I do notice fatigue but understand it is something to accept: that is, slow down, take rests when I need. Before I have a Rheumy or GP visit I have my list of questions and discuss each separate medication. Next visit I will ask for reduction/stopping of MTX. Not because of any bad side-effects but whether there are any real benefits. Last consultation I questioned Panteprazole (stomach protection) after reading on this forum some people had had bad side-effects. So Rheumy said ok, can stop with that and gave me something else instead (use only if needed) for reflux/acidity/discomfort. So far, stomach is fine.

As my Rheumy says, everyone is different. With knowledge and patience make the adjustments and weigh the advantages/disadvantages as you go. Therefore this forum has been key - especially the importance of dead slow taper. I don't know when (or even if) I'll go into remission. The main thing is quality of life. Agree with others here that when travelling, for example, up the dose, take it easy and enjoy.

[ipsidipsy]

Have you tried gastro resistant pred, which may eliminate the need for stomach meds.

[FRnina in reply to ipsidipsy]

thanks ipsidipsy- will look into that

[PMRpro Ambassador in reply to FRnina]

Sorry FRnina - gastro-resistant pred is only available in the UK.

[Hidden]

I was on Methotrexate tabs made me ill,put on injections but could not cope with the side effects felt so ill.But its like any drug we Don't know how we will be until we try,we are all different,i have been on Steroids since 2014 now at 4mg,i have just started new drug Actemra just had my second Infusion but you have to have tried a couple of drugs before being considered for Actemra.Wishing you luck and i am sure there are people on here who can advise how they got on.I have PMR.xx

[Suet3942]

I have posted about this before, long story short, have had pmr since 2013. Every time I got below 7 mg pred I flared. Been on mx now for 2 years. 8 weeks ago I stopped taking it as I mistakenly thought it may not be doing anything. 3 weeks later I had such bad pain in my groin/pelvic/buttock area that I was struggling to walk. So back on it. I’ve never had any problem whilst taking it. I have regular blood tests and so far,so good.

[sookiesue]

Hi there, I was diagnosed with GCA in 2011 and had my last steroid 6/7/18. Couldn’t get on with any of the alternatives. Unfortunately I have now developed PMR and am trying something other than Prednisolone. I developed Type 2 diabetes due to Prednisolone and hope I do not have to go on them again. We have to be guided by our physicians, but steroids take some getting off and there are definitely ups and downs. Good Luck.

[ThePainPrincess]

Hello, I was on Prednisone and given Methotrexate so I could wean off of the steroid. Unfortunately all it did was give me terrible mouth sores, weaken my immune system so then I got a terrible case of shingles that caused severe nerve damage in my leg. I did not have the vaccine, I'm in my 50's. I was so frustrated that I went off of both, tapered Prednisone very slowly. I am now taking LDN 4.5 mg at night and also Gabapentin for the nerve pain, also Tylenol as needed. I use a THC topical on sore knee, hands and feet as needed. I find it to work better then CBD. We are planning to move to a dry climate, Scottsdale AZ as soon as we can. I eat a mostly healthy diet and take Juice Plus as a vitamin supplement. My health is the best that it has been since I got sick spring 2017. Everyone is different. Trust what your body is telling you, if something is working, keep going with it, if not, stop. Best wishes!

[granny-b]

Hi. I have had GCA since June 2015. Did prednisolone only, starting at 60mg until I got very low. Stopped it to enable a Pet scan which confirmed I had GCA in all my large arteries in nov 2019. I started this new phase of treatment with 50mg pred and 20mg mtx. I have the injections as you don't get the sore mouth and my consultant says they are more certain of the dose I get without the risk of poor absorption. I am ok and reducing more quickly than on pred alone. I have monthly blood tests which also help me to know where I am up to and what is going on.

[PMRpro Ambassador in reply to granny-b]

I don't see how injections would avoid the sore mouth - that is due to the action of methotrexate on folic acid and why the folic acid is given. They usually avoid the nausea though.

[granny-b in reply to PMRpro]

Could be my misunderstanding. Sorry if I have mis-led. I haven't had any sore mouth even though I am on 20mg which is high compared to some others.